Myeloma Patient Perspective: "MRD Testing Gave Me Peace of Mind"
Published on December 13, 2018
[Editor’s note: (10/2019): Cherie Rineker had a long battle with myeloma that included 16 lines of myeloma therapy, numerous hospitalizations, and incredible physical and emotional stress. She decided to end her battle with myeloma with physician assistance in Colorado by using the End of Life Options Act. Cherie was an incredible source of inspiration who embraced healthy living and the latest in cancer treatments. She will be remembered as a myeloma advocate leader with a big smile that lit up a room. Cherie's personal motto was, “It was always about love anyway.”
Cherie Rineker, a mother, wife, myeloma patient, author and blogger shares from the patients point of view how MRD testing has given her peace of mind and a better understanding of her disease status. She shares how advances in MRD testing are reshaping her conversations with her medical team.
Read Cherie's blog here:
Sponsored by Adaptive Biotechnologies. This organization has no editorial control. It is produced solely by Patient Power.
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Transcript | Myeloma Patient Perspective: "MRD Testing Gave Me Peace of Mind"
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
Andrew Schorr:
Andrew Schorr here with my friend Cherie Rineker who has really been through it with multiple myeloma, but modern medicine seems to be making a big difference. First of all, welcome, Cherie.
Cherie Rineker:
Thank you.
Andrew Schorr:
So you have just had your nine-month checkup having had CAR T-cell therapy after years of therapy. You kept cycle through, what? Thirteen different?
Cherie Rineker:
Thirteen lines nonstop.
Andrew Schorr:
Right.
Cherie Rineker:
Including two stem cell transplants.
Andrew Schorr:
And they didn't keep working for you.
Cherie Rineker:
They never brought me into complete remission. They always took me down for some months and then slowly started creeping up.
Andrew Schorr:
All right. So you've been in for a clinical trial.
Cherie Rineker:
Right.
Andrew Schorr:
Based in Nashville, Tennessee, although you're from Houston, for CAR-T. You hustled to get in it. And you've been tested along the way with what we call MRD testing, minimal residual disease. From the patient's point of view, why is that testing important?
Cherie Rineker:
From patient's point of view, me personally, so many patients seem to get to complete remission fairly easy, and you kind of take that for granted I think when it happens the first time, but for me never, ever having gotten it there and then to find out I'm not only complete remission but stringent complete with minimal residual disease negative 10 to the negative 6, which is about as deep as you can go.
Andrew Schorr:
One in a million, I think.
Cherie Rineker:
That means to me that I am cancer-free. They have not detected any cancer in my body, so I almost feel like I'm a normal person now.
Andrew Schorr:
Amen, and you're doing well, I mean, when you were, let's face it, near death.
Cherie Rineker:
Yeah.
Andrew Schorr:
So this whole idea of minimal residual disease testing to help patients and their doctors really know have we knocked this disease if not out back to such a minimal, minimal level that can't be measured with modern science, that's really important.
Cherie Rineker:
Yes. It's very—it gives you peace of mind and—but I also found out that people with negative minimal residual disease they do have their cancer come back. So almost kind of wish I hadn't known that, because now it is still in the back of my mind that it actually can still come back.
Andrew Schorr:
Yeah, so that's the realistic view.
Cherie Rineker:
Right.
Andrew Schorr:
We want to believe myeloma can be cured.
Cherie Rineker:
Right.
Andrew Schorr:
We're not sure we can do that now, but…
Cherie Rineker:
We're on our way.
Andrew Schorr:
…less is better.
Cherie Rineker:
Right. Absolutely.
Andrew Schorr:
The least amount of myeloma, and if it can't be measured one in a million cells.
Cherie Rineker:
Seems like you don't have it.
Andrew Schorr:
Okay. And you're living your life now.
Cherie Rineker:
Yes.
Andrew Schorr:
Okay. Well, yeah for minimal residual disease testing now a key component of myeloma care. And also CAR T-cell trial, not working for everybody, unfortunately. You must feel very fortunate yourself right now.
Cherie Rineker:
Yeah. We're not allowed to use the word miracle and I feel like I did win the lottery. And it looked pretty bleak for me about a year ago, and this was truly my last hope, and I put everything into it and it paid off incredibly. And so even if ultimately it would fail, it's given me nine incredible months that I wouldn't have had without it, and for that I'm eternally grateful, as is my family.
Andrew Schorr:
Wow. Well, Cherie, we wish you not just many more months but many years, and it's just great. You're radiant today, and I know how sick you've been.
Cherie Rineker:
Yeah.
Andrew Schorr:
So, thank you for really being a pioneer because being in a clinical trial not only is it lengthening your life, but it provides information for your doctors to help many more people. Thanks for what you do.
Cherie Rineker:
Thank you.
Andrew Schorr:
Thank you. Andrew Schorr with Cherie Rineker radiant and doing well having been tested for minimal residual disease, negative, and being in a CAR-T trial for myeloma. We hope it paves the way for many more people.
Remember, knowledge can be the best medicine of all.
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
